• Replies 3 replies
  • Subscribers 25 subscribers
  • Views 1690 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Advice needed, please help - Son just had ADOS Assessment

mummy4

Hi

 

We have been lucky enough to get a cancellation for an ADOS assessment today.

They have said hes not Autistic as he didnt hit all 3 parts of the triad as he chatted and communicated, looked at the book and talked through the story (he can do this as hes clever little boy) but theres many other challenges in his behaviour and quirks he has.

They said if it was soley based on his repeatative behaviour or 'his own agenda' he would have been diagnosed but he did communicate.

They recognised his sensory issues and we're awaiting an appointment with the OT but it doesnt answer our questions or help my son.

I thought i would list some of the challenges we have'

He walks on tip toes

Will only play with his computer game (2 years talking about skylanders 0 obsessive)

He will build the most amazing lego models but will have a meltdown if its disturbed or broken down

He moans constantly, lots of tears and crying for no reason EG he was in the bath today and started crying that he hadnt had a piece of his skylander birthday cake and it wasnt fair.  He got very upset. His birthday was back in April?!

He talks at you and whilst he has friends at school they are 6 year old boys and have to play his game his way.

He doesnt have the right relationship with his 3 year old brother. Drove past him when he fell of his scooter, when i shouted at him for not helping him he then burst into tears and made more noise and drama than my son on the floor! Doesnt notice if hes not there

He doesnt like any form of nail cutting, teeth brushing - at the assessment they asked him how he brushed his teeth. He knows exactly what to do but cant cope with doing it.

He cant cope with change, he doesnt say he cant but we have to deal with his behaviour

Holidays are a nightmare even though he talks about having a great time before and after but whilst we are there theres lots of crying, refusing to do things, managing his behaviour

has to carry something when leaving the house, it was stones but he's stopped this

he constantly asks what day, year , month it is needs to know

Hes extremely clumsy

Has to be constantly reminded of simple task, getting dressed etc, he'll either do something else or moan and roll around the floor - can take an hour to get his uniform on unless i dress him myself.

the list goes on, so my questions are;

if its not Autisim what is it?

How do we help him?

Are the Sally anne Theory of minds accurate tests? i tried my son and he failed it yet my niece aged 7 and nephew aged 4 got it right

thanks for your help

 

  • Hi

     

    Crystal12 thanks for feedback, i think this is where my husband and I are struggling, we feel if we put all these allowances in, structure, etc and it isnt autism or on the spectrum then is it the right thing to do given life isnt like that, and should we be trying more to by more typical?

    I agree shouting is pointless although sometimes its difficult not too

    I've spoken to my husband and we agree we need to get some videos so we'll try that although he'll spot it straight away so dont want to make him feel bad about it too

    Noetic, thanks for the reply, i've had a look at PDA and there is definately things in their that reflect my son such as the avoidance to do simple tasks, rolling around the floor like a baby, moaning, distracting, excuses from legs hurting to tired are common, however he doesnt 'live' in imaginary play around people and i would say hes more fixated on objects rather than people, he is also not agressive even though he does cry, get upset or get mad crying if something sets him off but he's definately not agressive.

    I hadnt heard of PDA so its prob worth mentioning to his paed as he may have more insight into whether it is relevant to my son.

    Thanks again for feedback

     

  • It's rubbish to say because he communicated on this one occasion, he can't be on the spectrum. Quite shocking. 

    However read up on Pathological Demand Avoidance on the NAS website, the fantasy preoccupation and making excuses refusing to do as asked are very common in this "flavour" of ASD. Social communication is much better than in autism or AS.

    Link here: www.autism.org.uk/.../pda-pathological-demand-avoidance-syndrome.aspx

  • Hi - I can understand your concern.  Have you any written records of his behaviour or video etc which you can contact the professionals about. I would try + pursue another assessment by asking a professional to get the ball rolling again.  In the meantime, if you are sure he is autistic, then you can act accordingly to help him.  By this I mean you can build up your knowledge of how he is affected by autism as an individual + then put changes in place to support him.  You can also ask for a statement of educational needs without a diagnosis of autism.  My son sometimes used to get upset by something that had happened weeks previously or even a longer time ago.  It took him a longer time to process some things.  His crying will be for a reason, it's just you don't know what it is sometimes.  If you accept he is autistic, despite the lack of diagnosis, then you need to stop relating to him in the way you would with a neuro-typical child.  This is very important to recognise.  Also I've invariably found that shouting is totally counter-productive + makes matters worse.  I'm sure from what you've sd in your post that you've built up a knowledge of autism so you're on the way to be able to support your child in the best way you can.  As far as I'm aware, the Sally Ann test is reliable.